Friday, July 27, 2018

So much has happened in the last year, and I'm very behind (story of my life!) on updating those of you who don't follow me on IG or FB, but I love to write and I miss writing, and maybe (maybe?) I can get back in the groove. Are blogs even still a thing?

We just got back from spending six days in Phoenix at the DebRA Care Conference, a conference DebRA hosts every two years, where EB families from all over the country and even Canada come to hear from doctors, scientists, and therapists with the latest information and updates in the world of EB. As great as all of that is, nothing is better to me than getting to spend time with other EB families and Jonah getting to see that he's not alone. Getting to see that none of us are alone.

I did learn some new information this year, maybe some of the most exciting of which is a possible skin grafting option for Jonah that is happening in Minnesota by Dr. Tolar (who is the kindest, most passionate doctor I have ever met.) It is NOT the bone marrow transplant, and this is a much less risky procedure. It may not be an option for him. We would have to go to Minnesota to have him scanned (or something like that) to see if there is any area on his body that doesn't and hasn't ever blistered. I can't think of a place, but it's really hard to know, and Dr. Tolar thinks it's possible, maybe even likely. With his type (Junctional, with a Collagen XVII deficiency), it is apparently more common to have these "stronger" areas. I, however, have always said that Jonah is an equal opportunity blisterer, and that as far as I know, he can blister anywhere at any time.

Anyhoo... if there is an area where he hasn't/doesn't... Dr. Tolar called it something... something that started with an M (mosaic maybe?... Obviously I'm good at retaining super important, life-altering information), they could use a suction cup thingy to collect some of the "good" cells, take those to the lab, and create skin grafts out of that "stronger" skin to graft to other places on his body. He said this is not in trial phase. It could be done now. Anybody got an empty house in Minneapolis you want to let me stay in for free? Just kidding. It is definitely something we'll be looking into, but like I said, I'm not sure he would even be a candidate, and even if he is, there'd be a lot of things to get figured out. HOPE is always good. I told Jonah about the possibility of it, and he immediately started crying that he didn't want to do it, out of fear of pain. He endures a lot. The thought of extra pain/change is hard for him. Even minimal pain for a possibly very good outcome.Also, raising a nine year old is hard. Anyone?

One super bright point of the trip was the time we got to spend with Salim. Do you guys remember Laura, my right hand (wo)man that helps me plan Jogging for Jonah? We met right here on the blog when Jonah was a baby. She was actually nannying at the time for a little girl who was born the exact day as him. She would write to me saying that every time she fed the little girl, she prayed for Jonah to eat. When she changed her, she'd pray for his boo boo bottom. When she put her down to rest, she'd pray for sleep for Jonah. It was a sweet start to a sweet friendship. Fast forward a few years and Laura began helping me (saving me!) plan Jogging for Jonah, started her own EB non-profit called EB Promise that helps EB orphans in other countries, and has just adopted her own EB sweetie, Salim (4), from India.

LET ME JUST SAY THAT GOD IS GOOD, AND THE WAY HE KEEPS WEAVING STORIES TOGETHER IS CRAZY IN THE BEST POSSIBLE WAY.

We go to be there to pick Laura and Salim up from the airport when they got home from India. They have been back in NC for four months now, and only live an hour and a half from us, so we've gotten to spend some good time with them. And let me just say that Salim thinks Jonah is the BEE'S KNEES. And Jonah would say the feeling is mutual.

Salim is adorable, hilarious, loves to dance and sing, and is stubborn just like his mama. So he's pretty much the best is what I'm saying to you people.

And also, being around him makes me miss Anton so much. Grief is so weird, but I have teared up and thought of Anton more in the last week than I have in the last several months combined. I miss his smile, his voice, his silliness, the way he read Pete the Cat, his sweet, sweet spirit, and his hugs. I miss his mom and dad. I miss the way he brought us all together.Heaven is going to be amazing.We tried to enjoy some pool time while we were there but it was a balmy 116 degrees every day ("It's a dry heat," they said. "It doesn't feel that hot," they said,) so the pool felt like a super warm bathtub that you were sharing with 50 other strangers. REFRESHING.There was also some type of desert mouse or rat in the water slide pool that was valiantly rescued by a man who was obviously up to date on his rabies vaccinations, and a woman got stung by a scorpion in the pool, and her whole right arm went numb. GOOD TIMES. Needless to say, the pool wasn't my favorite.

Yesterday, after the conference had ended, we took a day trip to Sedona for a jeep tour through the Red Rock Country, drove the scenic route up 89 past Oak Creek Canyon, and had a quick lunch in Flagstaff, where it was much cooler. Sedona was amazing (and still super hot!), but none of my three boys liked the jeep tour, and I think it made them all feel sick. I am obviously made of tougher stock. If only I could have held on to Jonah AND taken pictures of Matt's face and the holding of his man parts, I would win the internet.

We have a new cooling vest for Jonah and I bought some cooling towels off Amazon, so Jonah was able to tolerate the high 90's temperatures. I am very grateful. Although he hated it. I recall him screaming that he was going to make a double appointment for the chiropractor next week, and yelling that he was trying really hard not to say a cuss word. (Matt told him he could if he needed to.)

Whatever. Adventure. Deal with it, Boys.None of these pictures do the landscape justice. As you drive north, the landscape changes every hour, from Phoenix to Sedona to Flagstaff, where there are forests of Ponderosa Pine (You'll just have to believe me on this. I didn't get pics in Flagstaff, because Jonah was threatening to vomit.)

All of it is beautiful. Because of the three hour time difference, and you know, kids, I was up early most mornings, and caught some beautiful sunrises from our hotel balcony. Maybe I will get up earlier at home to catch the sunrise. But probably not.

We have had a super adventurous summer, which has included a Smoky Mountain getaway for Matt and me for our anniversary, our annual Cousin Camp beach trip with Matt's extended family, and this trip to Phoenix. Gideon did a week long Taekwondo camp, where the theme was "Baseball Week" and he left/lost his glove at the field on the last day (Matt doesn't want to talk about it), and Jonah did a week of band camp (he plays the xylophone!) where he and the other three campers wrote, performed, and created music videos for two original songs! Our last hoorah will be a trip to Wilmington for Gideon's birthday in August to hang out at the beach and spend time with Aunt Sarah!Aunt Shaina just moved to Colorado two days ago because she is 23, free, and unattached. I am happy for her but also, she's my baby forever, and I might die not having her within an hour and a half of me. I mean, go live your dreams and blah blah blah, but also, if you don't come home for all major holidays, I'll cut you.Jonah's skin has been rough, but we've swum (Yes, that's correct. It's swim, swam, swum) a lot this summer, and it's showing amazing improvement. Something about the pool water, whether chlorine or salt, helps loosen his healing/itchy skin, so that I'm able to gently slough it off before bath. The new tub is helping some too. This helps reduce the itching, the scratching, and the subsequent blistering. We are back to daily bandage changes now. Sigh. I'm dreading the school year coming when I don't have as much time to give his skin (or anything in my life!) the attention it needs. How will we navigate school till 3, fourth grade homework, and two hour bandage change every night, and still get him to bed at a decent hour? I'm tired just thinking about it.Overall, life is good, but FORTHELOVEOFALLTHINGSHOLY, if these children don't stop fighting and calling names and generally antagonizing each other every cotton-pickin' minute, I'm going to lose my mind. Please send all your best parenting advice to my contact email. Please do NOT send me parenting book suggestions, because I'm definitely not going to read them, and then I'll just feel like I'm failing in yet another area of my life.Speaking of reading, have y'all read The Guernsey Literary and Potato Peel Society? Get it; read it; love it. The main character's voice is quirky, empowered, and feisty, and I want to be her when I grow up. Also, I can't stop reading books about the World War II era (just finished The Nightingale, Beneath a Scarlet Sky, and All the Light We Cannot See).

Send help.XOXO,Patrice

P.S. We saw a lots of cacti, a coyote, desert mice, rabbits, a roadrunner, and numerous lizards while in Arizona. AND there was a mommy bobcat and her two babies that lived outside our hotel between the courtyard and the golf course. They were really cute until the mama got mad about all the humans and snarled. Did you know they can pounce up to 10 feet? NEITHER DID I.

I am over the weird font and formatting on this post. Sorry I can't fix it. It's hurting my face.

1 comment:

It is so great to hear that Jonah got to go meet other children that struggle with EB! It is always good to see that we are not alone and share out stories (good and bad) to lessen the pain! What a great conference~The bobcats are adorable!!!! I had NO IDEA they could spring that far but I have a definite healthy respect of all WILDLIFE so I am sure I would not have gone close - HA!